At age 29, Kami Sjoberg seemed to have everything going for her. She had a great job with an advertising agency that allowed her to travel a lot, and she was engaged to be married to a wonderful man and was planning a wedding.
And then one morning she woke up feeling numb, with a tingling sensation down the entire right side of her body — from her face to her torso and all the way down her legs. Concerned about these strange sensations, Kami went to the ER where she received an MRI. The hospital referred her to her primary care physician, who officially diagnosed her with multiple sclerosis.
Multiple sclerosis is a disease that attacks the central nervous system — the brain and spinal cord — and potentially causes permanent damage to the nerves. Symptoms often vary greatly from person to person, but typically include numbness or weakness in limbs felt on one side of the body, partial or complete loss of vision, prolonged double vision, slurred speech, and dizziness.
“It was a Friday — I remember because Scott was getting ready to leave for his bachelor party weekend — and I had to meet with a neurologist,” Kami recalls. “I called Scott to tell him, who insisted on delaying his departure for the weekend so he could be with me at the appointment.”
Although the diagnosis was a bump in the road for Kami and Scott, they went about their daily lives as though everything was normal. Kami returned to work and continued planning for her wedding, which was just a few months away.
A Determined Bride – Life Goes on Despite Multiple Sclerosis
About a month prior to the wedding, Kami experienced an acute attack, awaking in the middle of the night seeing double and feeling dizzy and numb. By the end of that weekend, she lost her ability to walk.
“I was admitted to the hospital immediately, and I was freaked out about what was happening to my body,” Kami recalls. “Scott was an excellent caregiver throughout the entire experience. He had a great sense of humor and was a real rock for me.”
After two weeks in the hospital, Kami was finally discharged, although she was still unable to walk by herself. With her wedding a mere two weeks away, the doctors tried to persuade her to delay the wedding and Hawaiian honeymoon, but she refused. With drive, determination and a great physical therapist, she was able to walk down the aisle without assistance to meet Scott at the altar.
Although she was discouraged from traveling for her honeymoon, Kami and Scott made it to Hawaii and enjoyed a beautiful vacation without any flare-ups of her MS symptoms.
Living (and Thriving) With Multiple Sclerosis
Shortly after returning from her honeymoon, Kami made the difficult decision to take a three-month leave of absence from work, and ultimately decided not to return. She and Scott planned on starting a family, so she focused on her health and tried to reduce the amount of stress in her life. She went on to have two healthy baby boys, and never ran into MS complications during either of her pregnancies.
Kami’s symptoms came on fast and furious, and she was diagnosed with relapsing-remitting MS, which is the most common form of the disease for people who are diagnosed in their 20s and 30s. Her initial experience with the disease was frightening and debilitating; however, in the 20 years since being diagnosed, she has avoided the hospital and hasn’t had another acute attack. While there is no cure for MS, symptoms like Kami’s can be kept at bay with weekly shots.
Today, Kami lives a full life and does not feel restricted by her diagnosis at all. “I have learned to listen to my body,” Kami says. “If I ever notice that something weird is going on, I take a step back. But that really rarely happens now.”
Kami and her entire family have gotten involved with the National MS Society and have raised money by participating in both the annual MS walk and the MS bike ride in Kansas City. “The bike ride is something I never thought I’d be able to do,” says Kami. “It’s 150 miles over the course of two days. I’m very blessed. At one time in my life I couldn’t walk or talk or see, and I never imagined that life would bring me here.”
Personal Experience Drives Career Change
“I recognize every day that my health could be a lot worse, and I choose to be positive and move forward through challenges, rather than worry about what I can’t control,” says Kami. “MS has helped me dedicate my life to helping others.”
When Kami was diagnosed with multiple sclerosis, Scott gained experience from being a caregiver, and Kami gained experience from receiving that care. In 2010, the Sjobergs decided to go into the caregiving business themselves and introduced Right at Home to Overland Park, Kansas.
“We understood the personal side of the caregiving experience because of what we had been through together,” says Kami. “There are many challenges, but it’s all so rewarding because I feel so good about getting to help people every day. We don’t consider home care a business — it was a calling.”
Hilary Young is a writer dedicated to helping older Americans live healthier, more fulfilling lives. She currently blogs for HuffPost50, Fifty Is The New Fifty and Medical Guardian. You can find her on Twitter as @hyoungcreative.